No backpack!

Unlike Dora, Sofia no longer needs to wear her backpack during the day because we have *finally* moved her off of continuous feeds all day. She definitely likes the added mobility, even if the backpack was cute!

She's also being a really good capping girl. Now that she's been past her cold the past few days she's been capping essentially all day. We're going back to CHOP on the 19th to determine next steps.

Here are the kids building a tower with their future aunt.

Hooray for Daniel!

Today Daniel used the potty fully for the first time (fill in your own graphic details). While it is a little premature to declare victory, we hope that by the time Monday comes along he'll be all set at school!

Now if only we can get him off of drinking milk from a bottle.

Sofia is back to capping today. She stayed on passy throughout her cold which is a good sign and she still is a little congested but doing fine.

Both kids had a great Thanksgiving with Grandma and Grandpa Yang plus their uncle and future aunt. Like everyone else we'll be eating leftovers for a while! Pics to come.

All Day! Mostly....

Sofia went all day on her cap (except when sleeping) on Fri and Sat however it seems like she is coming down with something that is clogging up her nose and so she was half cap / half passy yesterday and today all passy. That's still really good given that previously when she's had any cold symptoms we had to put her on oxygen!

We still don't have a plan from CHOP yet but are going to keep pushing the capping. We're also waiting on the ok to shift her back to 4 bolus feeds so she doesn't need her backpack during the day.

Babbling

Here are two videos of Sofia babbling yesterday. Also a picture of Daniel sleeping on the couch, with our cat to keep him company while he's recovering.

6 hours!

Sofia did 2 hours of capping 3 times yesterday for a total of 6 hours! She's tired afterwards but very happy throughout. We figure she'll need to be able to sustain 9-10 hours a day for a week before we call CHOP to talk about next steps, so with luck maybe in the next month or so?

Unfortunately Daniel has come down with some kind of cold as he has a fever and isn't his normal self. Hopefully he recovers fast and doesn't give it to Sofia.

Update

We had a PPT with the kids' teachers/therapists today and overall both are making really good progress across their vast variety of issues. Most importantly both have really improved at their social and play skills since they started school.

Sofia continues to cap more and more today for a total of 1:45 w/ two 40 min sessions. She's really tired because of capping and practically all day passy. It is going to take time for her to build up the strength to cap all day.

Here's a video of her cracking up (and falling over laughing) while watching Olivia yesterday.

Back to cap

Sofia is up to almost the whole day on Passy and yesterday went to school on it for the whole time. However it dries her out a lot and caused some bloody secretions. After checking w/ the Drs this is normal and really the only way around it is to cap so that her mouth and nose can humidify the air.

She's mostly recovered from her illness so we started again this morning and she was able to do about ten minutes on the cap.

Power Outage

The houses around here must've been feeling left out because our power went out this morning just before 7 and only now just came on so we scrambled a bit, took the kids to church then came back and fired up the generator for a while. Luckily it turned out to be a non-event.

Lots of Updates

* During the storm Sofia pulled out her J tube so she is just a G girl now. That means at somepoint she may lose her feeding backpack when she goes to bolus feeds during the day. But not for a while.

* Daniel is *occassionally* using the potty. He's a big boy now!

* Sofia is back on her Passy. 4 hours yesterday! She's got a bit of a runny nose but we are attempting today to have it on her for all her waking hours and then repeat tomorrow. If that works we'll send her to school Mon on the Passy and then get back to capping.

* Today is Halloween for our town thanks to the storm. We finally cleared out the tree but still have other cleanup stuff to get done and a snowblower to fix (again!)

Preschool Pictures

Here are Sofia and Daniel's pictures from preschool picture day: